Donate

CRPS

How RSD Potentially Stole My Dreams- Cope With RSD/CRPS

Published on February 21, 2017 under Guest Blogger for RSDSA
By Guest Blogger Tatiana Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope. When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands…
continue reading

Painting CRPS: A Nurse’s Reflection of the Bible and Its Correlation to CRPS

Published on February 14, 2017 under RSDS General Info
Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS). This blog was originally posted on this website. Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "My rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." Thank you for the opportunity to share my artwork.…
continue reading

When Someone Offers You a Cure for CRPS

Published on February 7, 2017 under Opinion
All people that have been diagnosed with CRPS/RSD want in this lifetime is a cure. That’s why so many of us focus on awareness, awareness events, fundraising, and even on keeping up with the latest research. There is nothing more we want than to be the “old” us- the ones that can hop, skip, and play with our dogs, children, grandchildren, nieces/nephews, and so on, without being in excruciating pain and facing all of the consequences that come with it (if we can even get our bodies to move in those ways).  Please note everything in this article is my own opinion. Another common thing is that all of us have been told that someone has a cure. Most of…
continue reading

Music & Me- My Way of Coping with CRPS Pain

Published on January 31, 2017 under Opinion
By Samantha Barrett, Special Events Coordinator We all have our ways of coping with CRPS pain. I've been using music to get me through everything in my life, especially CRPS. It's time for me to share with you. For as long as I can remember, I’ve been singing along to music, making up my own songs, and dancing (even in a wheelchair) to anything and everything that comes on the radio. For a vast majority of my life, I was a dancer, a dance teacher, and a dance team coach. Everyone in my family played an instrument or could sing (not me though, I can’t get my voice to cooperate). I’ve always been on more of the A&R/music business side.…
continue reading

The Importance of People- Friends with CRPS

Published on January 24, 2017 under Call to Action
By Samantha Barrett, Special Events Coordinator I started my CRPS journey when I was a teenager. Of course, then, it was known as RSD, but a lot has changed over the years. I remember being diagnosed with “Reflex Sympathetic Dystrophy,” which instantly made me think that the doctor thought I was faking to get people’s sympathy. But, I soon found out it was so much more. Doctors didn’t give me much hope. They actually told me I would never walk again. But, I’ve always been a determined little monster. I did everything in my power to battle the beast that is CRPS/RSD. Physical therapy, acupuncture, medications, desensitization, and anything that was in experimental phases that I possibly could. But, there…
continue reading

The Club No One Wants- The CRPS Club

Published on January 18, 2017 under Guest Blogger for RSDSA
By Guest Blogger Jamynne Bowles Jamynne details her life, from being a young shy girl, to becoming a paramedic that suddenly joined a club she never asked to be in- The CRPS Club. What has life taught Jamynne? What is to come for The CRPS Club? Growing up in Northern Virginia, I remember being the shy girl who always wanted to fit in.  Overweight and pudgy, I was bullied a fair amount during elementary school.  You could say I was that proverbial “fat girl” that no one wanted to play with.  Unless, of course, it was kickball.  I had a strong leg, so generally I was one of the first few picked.  But if we played Red Rover, tag, or…
continue reading

Just Wanted You to Know: CRPS PRISMA Trial

Published on January 10, 2017 under Research and Development
Pain Reduction by Inducing Sensory-Motor Adaptation: CRPS PRISMA Trial In research funded by the RSDSA, scientists at the University of Bath in England are investigating a new treatment for CRPS that targets perception of and attention to the affected limb and surrounding space.   People with CRPS often report that the size and shape of their affected limb feels different to its true size or shape. People with CRPS also show changes in their attention to the affected limb and surrounding space. These changes to body perception and attention are reminiscent of symptoms that can arise after damage to certain parts of the brain. It has been suggested that pain and other symptoms of CRPS might arise as a result…
continue reading

New Year, New RSDSA Goals – Helping the CRPS Community

Published on January 3, 2017 under Call to Action
 By Samantha Barrett, Special Events Coordinator Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some! As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include: Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third year Continuing to transform lives with our "Treating the Whole Person Conferences," the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream Implementing our first statewide…
continue reading

From One Family to Another- A Pediatric CRPS Journey

Published on December 20, 2016 under Guest Blogger for RSDSA
By Guest Bloggers Bobby and Lauren Gellert The Gellert's daughter, Zoe, has faced CRPS head on. She has been inspired to do some great things. See what Zoe and the Gellert family are doing and what they learned about pediatric CRPS. “Dad!  You need to come home.  The doctor said nothing is broken or torn, but I still can’t put my foot on the floor.  It feels like someone is sticking a knife through my heel and it’s burning inside”. These were the words of our 11-year-old daughter, Zoe Gellert, who the day before was involved in a crush injury to her right ankle. Zoe was immediately non-weight bearing and was describing pain symptoms that made no sense based on…
continue reading

CRPS & GI – Frustrations From a Nurse’s Perspective

Published on December 13, 2016 under Guest Blogger for RSDSA
By Guest Blogger Beth Seickel, RN, BSN CRPS and GI issues may have some correlation. Nurse Beth details her perspective on this issue as both a person living with chronic pain and as a nurse. How can we prepare ourselves for hospitals? How can we educate the staff? As we educate the world around us, here is her story: So here goes! The frustration of living with CRPS spills over into everyday life we would all agree. Yet, speaking as a CRPS patient and Nurse, I have gained a unique point of view both as the health professional and now as the patient. Yet, my vulnerability as a patient was tested from an ER visit for acute abdominal pain and…
continue reading